Monday, March 11, 2013

It started with a realization: children Maya’s age were
walking and running, and she was creeping unsteadily with her walker. Because
of this, she was relegated to a stroller a lot more than other children her age
. . . which seemed counterintuitive to the whole learning-to-get-around-independently
goal. Walking independently would come slowly, with devices and splints and
soreness and falls, and long distances would be more or less infeasible, at
least for a solid few years. And so three years ago we applied for a handicap
parking permit for Maya, an accommodation that she clearly qualified for and
would benefit from.

In New York City, a handicap parking permit is a bit
different than the ones you see outside of the city. Here there are no “handicap
spots” on city streets, but you are allowed to park in a variety of areas (No
Parking, No Standing Except Trucks Loading And Unloading, etc) that are typically
off-limits to others. The permit lets us park closer to our destination, which
allows Maya to walk to and from the car, just like any other 4/5 year old
would. These permits are worth their weight in gold. If you could sell them on
the street (which you can’t, as they are all hologrammed up and have your
license plate number clearly printed in huge font on the front) they would go
for a pretty penny.

They aren’t easy to get.

And that’s ok. That’s fair.

Getting the permit proved to be a long process. We had to obtain a non-driver's photo ID for Maya (and if you think your license picture is bad, Maya probably has you beat). We waited to get her ID card in the mail, we filled out an application,
and then we had to have a packet filled out by Maya’s pediatrician. The packet asked questions about
the nature of her disability, the extent of her limitation. It asked,
prominently, if this is a permanent condition. He said that yes, this is permanent. (And, every year
since, he says that yes, it’s permanent.)
After submitting the application, we waited to get assigned an appointment with
a city-appointed physician. (This step, I assume, is to prevent city-dwellers
from calling in favors from their doctor friends and getting permits willy
nilly.) Then we waited until the date of our appointment. Then we went to the
city medical building, met with the doctor for 5 minutes, and he told us that a
decision would arrive in the mail. So we waited again. Finally, the permit
arrived in the mail.

It took about nine months from the time of our initial application to the time that our permit arrived. But we were happy. For a year.

The permit only lasted a year, despite the fact that my
child has a genetic condition that is not going to change. Although she makes
slow and steady progress, walking is hard work, climbing stairs is exhausting,
and balance issues add an element of danger to any path we travel. Despite the “yes, this is permanent”, the pass only
lasts a year.

Ok, fine.

After the first year the papers arrived to renew our permit,
and I was elated to see that we didn’t have to see the city doctor.It’s a gimme . . . you can get your pass renewed
automatically.*

(*except not really
automatically because you have to resubmit papers, and if you miss the deadline
then your permit would expire and you would have to start all the way back at
the beginning again, do not pass go, do not collect $200.)

Another year passed. This fall we got the big packet again,
forms for our pediatrician and the promise of a city-appointed doctor visit. Our
pediatrician filled out the forms (yes
this is permanent) and I mailed them in. As the days ticked by my anxiety
level climbed---we hadn’t yet received an appointment with the city doctor, and
yet our permit was soon to expire. A call to the permit office told us that
they were backed up and we would now* receive a temporary pass to cover the
time until they sent us an appointment time.

(*now that we called,
of course, because even though they knew that they were going to miss their
deadline and our permit would expire, they weren’t planning on making sure we
were covered unless we took the initiative to point out that we were being left
in the lurch. You know, like: “If you miss your deadline then no permit for you
but if we miss our deadline and you didn’t realize it in time, then no permit
for you.”)

In January, an envelope arrived. I assumed it was the notice
of our appointment time with the city doctor. I was so wrong. Below the picture I've pulled the
essential quotes from the letter:

In reviewing your
application, we find that the additional medical documentation is required.

-chromosome labs

-CT scan: brain

-developmental pediatrician
report

-psychological evaluation

-IEP

-school special ed

-neurology

-details of orthotics

The above requested
documentation should be on your provider’s letterhead and forwards within
thirty (30) business days of this notification . . .

You have got to be kidding me.

First, a minor (but infuriating) detail---they fudged the
date. While the top of the letter proclaims Date
Mailed: 1/7/2013, the postmark quietly confesses that it was actually
mailed a full week later. This is not the first time I’ve received
correspondence from this agency with date discrepancies, although it was the
first time that I thought to save the envelope and take a picture. With only 30
days to gather a lot of obscure medical documentation, they were trying to
shave 7 off the top. A 3 week turnaround on a plethora of papers that need to
be collected from hither and yon seems, well, unfair.

Not cool.

Second, a major (and also infuriating) point---most people
don’t have copies of their lab reports at home. Generally MRI results, genetic
lab results, developmental pediatrician reports, etc. remain in the doctor's office, in your file. Or
files, actually, because the MRI would be in the neurologist’s file, the
genetics labs would be in the geneticists’ files (that’s plural geneticists’
files, because we’ve worked with more than one geneticist), etc. That’s a whole
lot of paper-gathering that has to be done. Add to that the fact that some
doctors need written requests for copies of files and some hospitals need
requests to be made in person with photo id. Some places are happy to fax
things over, but not all people have access to fax machines.

Third, some of these things don’t exist. “Details of orthotics”? What does that
even mean? Is that something that I write? Or the physical therapist, or
pediatrician, or the place that created the orthotics?It’s clear as mud, and I’m fairly sure that
if I don’t read their mind correctly our permit could be denied on a technicality.

And now that the small stuff is out of the way, let’s get
down to my two major contentions: relevancy and privacy. Clearly, when we
applied for a parking permit, based on medical necessity, we must expect to
divulge some personal medical information. As a parent, it’s troubling to send
your child’s medical information into the great wide open, but that’s the
concession that comes with asking for a medically necessary allowance. So I
try to make peace with that.

I understand that they need to know about her disability,
and the pediatrician paints a clear picture in his forms and recommendations
and yes it is permanent. I respect
their request for information about her orthotics (do they really exist and what exactly are they for), and can
understand why they asked for her IEP (does
she really have physical therapy goals for this year) and progress notes
from the school (which could possibly say
that she’s met her PT goals and is now the champion at the 40 yard dash).Perhaps I can even understand the request for
genetics labs, although they are so intensely personal, because we claim that
our need for a permit is due to a genetic anomaly. (Although truly, a letter from the geneticist should be fine. The
details of my 4 year old’s genetic labs aren’t really necessary.)

But why the psychological
evaluation?There’s nothing
psychological about our need for a permit. At all. Truthfully, had we not been
going through the kindergarten process we wouldn’t have even had a psychological
evaluation to offer.Why the CT scan of her brain? First of all, it
was done in 2009. Second of all, it was normal. Third, it has no bearing on
this situation.A report from her developmental pediatrician? And her neurologist?Well, we haven’t seen the developmental
pediatrician since 2011, and no word from the neurologist since 2009, but sure,
I can see why you would need to see those reports, both of which are grossly
outdated and neither of which have anything to do with Maya’s need for parking
concessions.

It leaves me feeling like I have no choice but to expose an unnecessary
amount of my daughter’s private medical information. Because that’s exactly what
I had to do.

It was infuriating. And it felt very unfair. And I couldn’t
see any way around it.

So I sent it all in. On time. Labeled with post-its. Via
certified return receipt mail.

And I waited.I
thought to myself, They must have a plan
here. Probably, if you have a child with a permanent disability, you see the
doctor the first year, get an automatic-ish renewal the second year, have to
send in bucketloads of supporting documents the third year, and then maybe you
get a ten year pass or something.

When the envelope arrived this past Monday, I tore it open and was
shockedfrustrateddisappointedsoveryangry to see that the pass expires in
November. This November.8 months from
now I’ll wait to see what they ask for next, and in which way I will be
expected to declare she’s DISABLED! She needs SO MUCH HELP! Let me prove to you HOW
DIFFERENT my daughter is and how many SPECIAL NEEDS she has and how it is
PERMANENT, it’s PERMANENT, and WHY MUST I KEEP TELLING YOU that she CAN’T WALK
FOR LONG and her BALANCE ISN’T GREAT and everything IS MORE WORK for her.

And everything is more work for me.

And SHE GETS SO TIRED.

And I get so tired.

I am so tired.

I shouldn’t have to fight annually for a parking
permit.I need to fight for therapies,
and to fight for school placements, and to fight for her rights over and over
again.I need to fight insurance
companies and to fight for assistive technology, and then to fight people to
use the assistive technology that I fought for. I need to fight prejudices and fight ignorance
and often fight her as she is pushed and challenged and learning to fight for
herself (I hope).

I shouldn’t have to fight, annually, for a parking
permit.It doesn’t feel right.It feels like I’m being asked to jump through
hoops and hoops, just for the sake of jumping and the hope that I miss a hoop
and don’t get the magic permit.It doesn’t
feel fair.I’m not trying to steal
something or to pull a fast one, I’m trying to get a pass that will allow my
daughter to walk to and from her destination, just like other kids her age. She
deserves it, fair and square.

It seems like it wouldn’t be much more work to grant a 3-,
4-, or (hey, let’s get a little crazy) even 5-year permit to families of
children who have clear and permanent disabilities. If not, why not at least
make the permit last 2 years, since there’s an automatic-ish renewal in there
anyway.Or maybe just ask for the
personal medical records that are actually essential to determining whether a
parking permit is necessary, rather than just checking (many, many) boxes at
random.

And to add insult to the insults to the injury, the permit
that expires less than a year from now came with the note below, which includes
the request to return any inactive permit(s) in my possession (please note the
fact that in the past two years it has never been mentioned that expired
permits must be returned).It ends like
this:

Please note that failure
to comply with this regulation by submitting the inactive permit(s) will oblige
us to make you non-renewable and prevent us from issuing you any future
Permits.